For most students, school offers a safe, accepting, and nurturing environment. For a student with epilepsy, his or her sense of safety, acceptance, and opportunity is influenced by others' understanding of the disorder, their response to seizures, and their expectations of the student. The unpredictable nature of epilepsy means that teachers - indeed all school personnel - and other students may suddenly, without warning, have to respond to a seizure at school. The student who has a seizure at school may face a range of consequences and reactions to the episode, including embarrassment, fear, rejection, and interference with the learning process. Including epilepsy education and awareness in the school curriculum can minimize these consequences and help to assure everyone that epilepsy and seizures can be dealt with appropriately.

The School Alert program

The School Alert program of the Epilepsy Foundation of America (EFA) and its network of national affiliates offers a variety of materials and strategies for educating school personnel and students about epilepsy. Inviting a person who is knowledgeable about epilepsy to be a speaker at the school can increase everyone's confidence in their ability to respond to a seizure and their understanding of the concerns a person with epilepsy may have. In turn, these benefits will help the student with epilepsy feel more secure and accepted and will reduce the parents' concerns for their child's safety and general well-being while in school. Excellent materials for use in a school epilepsy program are readily available through EFA (1-800-EFA-1000) and its local affiliates. The flexibility of format and variety of content of these materials make them suitable for any school setting and age level. Reaching thousands of students and school staff each year, epilepsy education programs all have the goal of improving the school environment for the student who has epilepsy. Having an epilepsy expert meet with students and staff offers opportunities for the speaker to provide basic epilepsy education and to address specific concerns the audience may have about dealing effectively with epilepsy in a school setting.

What if there isn’t a local EFA affiliate in my area?

The benefits of a coordinated School Alert program, including outreach, organized content, and a cadre of trained and knowledgeable speakers, are apparent. However, even in the absence of a local epilepsy organization to implement an ongoing School Alert program, parents and schools nationwide can access the materials, including an array of videos and manuals, to learn about epilepsy. In the absence of a local epilepsy organization, parents can offer to work with the appropriate school personnel, typically a school nurse or health educator, to gather and review available materials and help plan a presentation.

When should I implement an epilepsy awareness program?

Too often, epilepsy education is provided only after a student has a seizure at school. Such common reactions as fear, helplessness, and genuine concern for the student's safety initiate an epilepsy awareness program. Certainly a better approach would be to teach students and staff beforehand how to respond to seizures and to those who have them. But first, the availability of and need for such a program must be brought to the attention of school faculty and administration.

Notifying the school

The parents of a child with epilepsy should notify the school of their child's epilepsy and how best to respond if a seizure occurs in school. Consistency in the response to a seizure both at school and at home increases the child's sense of security and avoids sending the child mixed messages about what a seizure is and how to deal with it. Parents should also encourage school administrators to contact the local epilepsy organization to request a School Alert program. If administrators express any hesitancy in doing so, parents can offer to contact the epilepsy group to schedule a program. This approach demonstrates the parents' strong desire to have the program and a willingness to work with the school.

Promoting an Epilepsy Awareness Program to the school

When promoting the program to a school, parents or the local epilepsy organization should remember to highlight the following:

• Epilepsy is one of the most common chronic neurological disorders and one with which all school personnel should be familiar
• It is estimated that between 1% and 2% of the population has epilepsy.
• Given that more than 60% of the cases occur before young adulthood, chances are that every teacher has had or will have a child with epilepsy in his or her class.
• Epilepsy education programs encourage tolerance of individual differences
• Feature a basic health/science lesson in how the brain and central nervous system work.
• The possibility that an epilepsy education program may be approved for continuing education credit for teachers, school nurses, social workers, and other professionals.

A School Alert program provides a general overview of epilepsy and approaches to dealing with common concerns about the disorder. It is not intended, nor should it be, to draw attention to any one student or to provide medical advice or answers to specific individual needs. If a program is offered in a classroom or school where a child is known to have a seizure disorder, it is recommended that the student and the child’s parents be informed of the program and asked for their input to ensure that the program has a positive impact on the child. Very often, parents and students with epilepsy are willing to participate in epilepsy education programs to describe firsthand their experiences in living with epilepsy and how they prefer a seizure be handled. Program content will depend on the audience, of course. And audiences will vary. The ideal is to offer a classroom presentation for students and a separate in-service program for school personnel.

In-service programs

The content of in-service programs for school personnel should have greater depth. In addition to providing basic information on epilepsy and first aid, an effective program should offer strategies for dealing with epilepsy in a school setting. It should address the impact epilepsy may have on the educational, social, and vocational development of a student and include suggestions for assessment and appropriate interventions. Speakers need to be knowledgeable about the topics, well prepared, and comfortable with public speaking. Ideal candidates to recruit as speakers include local neurologists, epilepsy nurse specialists and other neuroscience nurses, social workers, staff members of local epilepsy organizations, and persons who both have epilepsy and are well versed in educational issues.

Suggested topics for staff presentations

Suggested topics for a staff presentation are listed below with narrative on how to increase the school's positive response to epilepsy:

1. An overview of epilepsy and its causes: Includes basic facts about seizures, definitions, and incidence and prevalence of epilepsy. This topic also includes safety and information about daily living habits that may prevent epilepsy.
2. An explanation of the different types of seizures: Includes classification of seizure types, extent and location of brain involvement, observable manifestations of different seizure types, and common seizure triggers. Discussing different seizure types and their outward signs increases a staff's ability to recognize possible seizure activity. The role and importance of teachers' observations should be emphasized because teachers may aid in the early detection of seizures and in recognition of possible seizure triggers. Discussing ways for teachers to share their observations with parents and medical professionals can help in early diagnosis and determination of treatment. Also, the topic of recognizing seizure triggers can be discussed with students with the intent of possibly preventing a seizure occurrence.
3. Appropriate first aid for seizures: Emphasizes that seizures can be dealt with efficiently and in a matter-of-fact way that reassures others of the person's safety. Includes information about secondary injuries and status epilepticus and helps establish guidelines for obtaining emergency medical aid.
4. Treatment options that help to control or reduce seizures: Includes a discussion of treatment compliance and opportunities for students, when appropriate, to assume responsibility for taking their medications. Discussing side effects of medications once again underscores the importance of teachers’ observations, encouraging them to look at the variety of factors that may influence a child's academic performance, behavior, and sociability. These factors include the seizures themselves, antiepileptic medications, and anxiety a child may feel about possibly having a seizure. Discussing the array of treatment options, including medications, surgery, special diets, and self-help skills, may also prompt a dialogue, encouraging students whose seizures are not well controlled to consider a medical reevaluation and to utilize comprehensive epilepsy services that are now more widely available.
5. The spectrum of psychosocial factors and common problems often associated with living with epilepsy: Includes recommendations for rectifying or possibly minimizing psychosocial concerns. Discussing this topic increases the staff’s ability to explain epilepsy to others, promotes acceptance of the student who has epilepsy, and encourages the student to function at his/her full potential. School personnel need to feel comfortable about providing opportunities for students with epilepsy to increase their independence (eg, take responsibility for their medication), take appropriate risks (eg, play sports), put their epilepsy in its proper context (eg, understand what limitations, if any, their epilepsy presents), and look at viable options open to them.
   

   A common concern is the child's participation in recreational activities or tasks that could be considered dangerous. As important as it is to minimize risks, it is also important to remove any unnecessary restrictions. It should be emphasized that a diagnosis of epilepsy does not, in itself, preclude participating in an activity. However, assessing the impact of certain factors on a child’s participation in a specific activity can help in the decision making process. These factors include the child's seizure type and seizure frequency, what happens during a seizure, the presence or absence of an "aura," side effects of medications, and the child's overall level of functioning. Restrictions imposed by parents and/or medical care providers need to be honored. As changes in these factors occur, new opportunities may become available to the student.

6. Community resources: A child's situation may be further complicated by other medical concerns; learning or cognitive difficulties; or social, behavioral, or emotional problems. Families often seek help in understanding laws pertaining to education and in obtaining optimal medical care, financial assistance, and appropriate support services. Providing the best education for some students may require a comprehensive approach through a number of disciplines. Schools may request very specialized assistance in assessing a student's situation and in developing an educational plan. Including a list of medical and support services with epilepsy education materials is helpful to parents and school personnel. The EFA, the local epilepsy organization, and the National Information Center for Children and Youth with Disabilities (1-800-695-0285) can assist in compiling a list of services specific to an area.

Growing with the child

As the child with epilepsy grows and progresses in school, his or her concerns will change. Common concerns as children mature are the possibility of increased seizure activity, treatment compliance, effects of medication changes, and the influence of puberty and body changes on seizure control. Social issues will also change with time. Acceptance and self-esteem are continual concerns for most children with epilepsy. Students, parents, and teachers may have to deal with the impact of seizures on driving privileges, dating, sports, recreational activities, and academic stress, to name a few. It helps to know that as these issues arise, community resources are available to assist in assessing their impact, to provide information that can help in decision making, and to offer referrals to needed services.

A school epilepsy education program serves as the foundation for an ongoing relationship between the child with epilepsy, his or her peers and teachers, and the community that can assist in addressing a continuum of issues. The program will benefit many people, but especially students with epilepsy.

Topic Editor:Steven C. Schachter, M.D.
Last Reviewed:9/16/04